There has been SO MUCH happening in Sep/Oct that I’ve had to split my usual ‘what i’m into’ into 3 parts – Book Reviews, general life roundup plus links (this one), and M.E. news (later this week). Without further ado…Newsy things and life in general
We threw a barbecue for 42 people in our house, to welcome some new folk to the area. Despite rain, it went really well, and all the people-contact fed my extrovert soul without seeming to drain me too much.
Jon went to his first academic conference as a doctoral student, and I was left home-alone for a week. “How does someone with severe ME look after a child all week and cope alone?” I hear you ponder. The answer is: they don’t. We couldn’t do it without additional help. An amazing team of friends stepped in to take the boy to and from school, entertain him after school, feed him, bring him back.
I got help with the shopping; my lunches and breakfasts required no preparation, and my dinners were pre-made by Jon, so I could just pop each one in the microwave. We have a fridge and microwave upstairs for the days that I’m too wiped even to go downstairs on a stairlift. I had people to help load and unload the dishwasher. It’s humbling having to ask for help, and I’m always blown away by the generosity of others who step in for us.
My role was to generally cajole the boy into getting dressed/cleaning his teeth/doing homework by doing an Olympic-style running commentary and timing, adjudicate on all Matters Disciplinary, read stories, and provide hugs and kisses on request – and I ROCKED it. At the end of the week, I awarded myself a gold star for awesome parenting.
Day room spruce
Reason #100006 that Jon is wonderful – I wondered if we could move my Day Room bed from the dark corner to by the window. Jon took all evening to move all the furniture round, and – voilà! My bed is bathed in light. (Just ignore the terrible carpet – we don’t even see it any more…)
October – spinning
In October, I had a weird episode of vertigo, that I just couldn’t seem to shake. Vertigo is a medical term that means the kind of dizziness when the walls spin round you when you move your head. It seemed to improve, then returned with a vengeance two weeks ago, and is only just easing off a bit now. It’s a bit like being on a cruise but without the views, or drunk, without the alcohol and hilarity. Fortuntaely I haven’t had much of the disabling nausea that so many experience, but I’ve been really, really sleepy this month, so not been able to get much done. I’m practising being flexible! It could just be a symptom from either the M.E. or the POTS that I have, but a few internet friends urged me to get the symptom checked out, and my wonderful POTS specialist doctor agreed, so I’m having a few tests later this month, just to check that it’s not another condition. Watch this space!
Harvest Cuteness
One exciting thing I did manage to do in October was to see my boy in his Harvest Festival. The boy successfully predicted the point that I would cry (it was when they sang and signed the Lord’s Prayer). Did you know, he still waves and hugs me as he passes me? I know that he will grow out of that at some stage, but it makes my mother-heart very glad.
My first speaking gig in six years…
I was invited to speak at a church in Exeter, but when I declined because I’m housebound, they came to me and filmed an interview. For c. 38 minutes, I talked about life with ME, suffering, anger with God, and relating to God in hard times. The video was the focus of the church event, and to provide a ‘live’ element, I answered audience questions via phone on the evening itself. It was only at the end, when I heard the applause, that I realised there were about 200 people there. I’ve been really blessed by the feedback.
The video can be found here, and the audio Q&A session will follow soon.
FASHION
MAC lipsticks. Jes Kat Keat and Alice Buckley wow in ‘Ruby Woo’, Alia Joy in ‘Lady Danger’. Every time I saw someone wearing an amazing lipstick online, it turned out to be a MAC one. So, after getting my trip-out-of-the-house haircut I persuaded Jon to squeeze a five minute stop by the MAC kiosk.
So Chaud on left, Lady Danger on right
I came away with ‘So Chaud’ and ‘Lady Danger’ (COMPLETELY different shades, not at all similar) and I am a complete convert. These lipsticks are the longest-lasting I’ve had, and I’m in love with the colour. I’m already planning the next shades to buy…
[LOOK AT ME BEING A BEAUTY BLOGGER! IT’S ALL SO UNLIKELY! THIS IS COMPLETELY HILARIOUS TO ME.]
Plus, Revlon Chocolicious, just for fun. I hear vampy is back…
TV
- The Big Short – a film about the economy that manages to be informative AND gripping? Yup. Brilliant acting all round – excellent film.
- A World without Down’s – Sally Phillips’ documentary. Thought-provoking, must-see.
- Extras – I gave it a couple of episodes, but all I found was Ricky Gervais trying to make it acceptable to make disparaging and offensive comments about disability and race under the guise of comedy. There’s a thin line between offensiveness in comedy for the sake of alerting us to social injustice and just plain offensiveness – and this falls the wrong side of that line. Avoid.
- Dirty Dancing – I watched Dirty Dancing a couple of times before and just didn’t see what the fuss was about. The first time I was a teenager and I basically had no idea that Penny had even got pregnant. The second time I was like, “so…it’s a holiday romance?” But this month I watched it and was all “OH – the dancing! I get it!” Dance as a metaphor for falling in love! So – a few decades late, but – wow, Dirty Dancing is quite a cool movie, isn’t it?
Book Reviews, Sep Oct 2016
Books
Don’t miss all these book reviews! See this post for my book reviews, fiction and non-fiction.
Music
- Love in the future and Live from Philadelphia – John Legend. His latest stuff has more of a chillout feel, and I really enjoyed it.
On the Internet
Disability and chronic illness
- The Mighty – I won’t apologise for having fun while chronically ill
- Naomi Chainey – Where is chronic illness represented in popular culture?
- So helpful on the issue of ‘gaslighting’ in medical circles – The Mighty – We Cannot Continue to Let Doctors ‘Gaslight’ Chronic Illness Patients
- I’ve since read articles that suggest that there’s more complexity to this story – in the Olympics the qualifying times are often much faster than the final itself – but even so, these visually impaired athletes inspire me. Independent – Paralympics – Four 1500m runners finish faster than Rio Olympics gold medal winning time.
- A good idea – TfL trials new disability badges
- Applying for #PIP or know anyone who is? Brilliant new site on case law and definitions to aid with filling in forms – PIPinfo.net
- “I was expecting a tragedy, but I got a comedy.” Sally Phillips talking about her brilliant documentary for The Telegraph – well worth a read – My Son Has Down’s Syndrome But I Wouldn’t Want to Live in a World Without It
- Sally’s documentary is no longer available online – but this is a good interview with her here: Sally Phillips Interview on Peter Singer and screening out Downs
Politics and social justice:
- US Election and Brexit? Back when it looked like Donald Trump had spectacularly lost the election from the tapes of him claiming to have sexually assaulted women, I analysed the parallels between the Brexit campaign and the POTUS campaign, and warned voters against complacency in the election. You can see my tweets on Storify here. I’m praying for America as they/you go to the polls. Brexit and POTUS Election Similarities 16 Oct 2016
- Via Stella Creasy – Les Enfants du Calais: Please Write to The French Government to Help Get All the Children in Calais to Safety
- Christian Today – Why every Christian should watch, ‘I, Daniel Blake’
“This is not something we can ignore… This wasn’t just a lewd conversation, this wasn’t just locker-room banter. This was a powerful individual speaking freely and openly about sexually predatory behavior.” – Michelle Obama on Trump
- Standing ovation for Michelle Obama (I kinda wish the Obamas could stay in the White House a little longer…) Michelle Obama Live
Parenting
- Washington Post – On raising kinder, less entitled kids
- How Good Parents Miss Child Sex Abuse and Five Questions to Change That | Stop Child Sex Abuse
Suffering:
- How can God Allow Suffering? Scroll to 24:00 to see @JustinWelby’s excellent answer (or watch 19:41-27:14 to hear his story of losing his child): (interview with Jeremy Vine) Justin Welby speaks to Jeremy Vine https://vimeo.com/186496236
Writing
- Pretty much why I write… How 20 minutes of writing can help you out of a funk
Whimsy:
Popular On the Blog
- Lots of people relating to this reminder of the importance of seasons of activity and rest – Sleepy Wasps and Ecclesiastes
- DON’T MISS – my video interview on ME, calling, the goodness of God and suffering. Click here to view. https://vimeo.com/185538772
AND… I’m a finalist for an award! Delighted to have been shortlisted for UK’s Premier Digital Awards Tweeter of the Year, 2016. The winner will be announced this Saturday. The other finalists are well worth checking out – see here for the full list of finalists in all categories.
[As ever, I’m linking up with Leigh Kramer’s brilliant What I’m Into series]
NB:
I’m sending out a newsletter soon with more personal news and updates on book projects. I send these out once every 2-3 months, so if you want to keep in touch without getting overwhelmed with emails, this is a really good way to do it. Sign up below or here for the newsletter, and receive FREE my 5* review book, Coming Back to God When You Feel Empty.
Wow, it seems like you had a couple of very exciting months! I’m so glad your vertigo is getting better and I hope it’ll be completely gone soon! Also, you look amazing in those lipsticks!
I should probably send you an email at some point, lots of exciting things are happening in my life too at the moment.
x
Yes please to the email! I wanna know ALL THE EXCITING THINGS!
Hi Tanya, I’m so glad a friend sent me a link to your interview video; it was more encouraging than I can say to hear you speak of your experience and faith. I have had ME for 7 and a half years, and my son has had it for 7 – since he just turned 7. Now about to turn 14, he is struggling with a relapse which has hit him hard psychologically as well as physically. He has hardly been in school for a year-and-a-half (school attendance is the marker everyone seems to judge him, and us as parents, by) and at times has been close to giving up on trying to do anything. I am able most days to the basic running-the-home and looking after the family tasks, but the challenge of caring for my son, encouraging and motivating him, and also being his teacher (I am a primary school teacher, so I try to remember to remind myself – not easy with a sieve-like brain, as you know – that God has provided for my son where the ‘system’ has been lacking, and provided a ‘class’ for me, which I desperately miss at times. Other times I think how on earth can I teach when my head is full of fog… My husband is supportive and does all he can to help, but has his own struggles with how our family life is affected. My daughter is a joy to us all, and has a heart to care for all around her. My heart went out to you when you said that you have to rest for around 21 hours a day – leaving so few for activity; in particular I thought of your son…so to read this morning that you recently managed a whole week of doing the normal motherly ‘Brush your teeth’ etc things made me so happy for you. I think you deserve a gold crown, never mind a star – but we know there’s one stored up for you already. I need to go now, so sorry for a meandering message; I just want to say I really appreciate your honesty and humour and that you give your energy to sharing with and inspiring others.With love, Lisa (in Oxford)
Dear Lisa,
I was really moved by your comment. It is hard enough managing with your own ME, but when I read of your son’s ME, my heart dropped into my stomach. It just seems so UNFAIR – not only the disease, but the way that everyone else responds to it, and seems to judge you (e.g. on school attendance.) It sounds really, really hard for your son. It’s so hard to pass on the essential message that ‘there’s no hurry, you don’t have to feel pressured, and you can always catch up on education, but you can’t ‘catch up’ on health’ when other people are communicating ‘there is a hurry and WHY AREN’T YOU BETTER YET.’
I really love your re-framing of it that God has given you a classroom, and he a teacher. He is so blessed in that respect – he not only has a qualified teacher, but one who understands, utterly, what it’s like when you’ve got to your limits, and understands the emotional cost of it all as well. I’m praying for your whole family today, though, it seems so hard.
Thank you so much for your affirmation and kind words. I do feel the need to temper your sympathy for me, though – although I need to spend 21 hours a day in bed, I am fortunately able to do bursts of cognitive energy while in bed (e.g. writing on iPad and reading), and I have much much better cognitive energy than most in my position, so I consider myself fortunate. I have been there (and am still there in relapses) in those hours of staring at the walls, your brain wired and fizzing, but directionless and foggy at the same time. It is a hard place to be. I’m asking God today for relief for your son, and a speedy healing.
Tanya
p.s. I lived in Oxford for six years and loved it. Waving hi to your city, too!
Good for you for managing on your own while your husband was away! It can be challenging while your kids are young. But enjoy all those little boy hugs because it all goes by so fast! Mine are now 18 and 22 and in college.
I just gave my husband After the Fall for his birthday, but he hasn’t read it yet – sounds great!
Vertigo can be awful – my husband gets it sometimes. It is sometimes caused by a virus, but often you can help get rid of it by doing the Epley Maneuver – look it up online – it’s a simple process of rotating your head in a certain way to get the inner ear parts back where they belong.
Hope you have a great November, too!
Sue
Book By Book
Living with ME/CFS
Thanks, Sue! My doctors have all been a bit vague so far about the Epley wotsit – I think none of them are too confident about doing it! But after I’ve had the tests to eliminate other causes, I may well get watching multiple youtube videos about how to do it! Thanks for taking the time to comment!
What? How am I not following you on Twitter? Besides the fact that I’m the worst tweeter ever. 🙂 Anyway, I’m following you now. I only have an account under my pen name and I rarely use it, but I shall now stalk every once in a while over there.
I love reading your posts. I have no specific comments except that I love them And you. xoxo
Do stalk! (Although all my interesting things end up being on Facebook as well, because I’m so pleased with them I want to share them with EVERYONE…)
And – you are awesome. I keep thinking of A Threat of Shadows. It’s so good.